February 2012
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| 2/2/12 Therapy at SWAN |
AJ is looking like Brad Pitt. He is not on his way to the red carpet, but he is on his way to therapy at SWAN's outpatient therapy. He is being transported on a gurney. SWAN is a very active place filled with a lot of hope. They did not know quite how to handle AJ showing up in a gurney. He didn't have a wheelchair yet. His right arm is contracted up with a closed fist and his left arm has no movement. This is so unfortunate for him as he is left handed. We have great hopes for him as the therapy is beginning.
AJ has a pressure sore from the fall on his coccyx (tailbone) that is not healing properly. Probably due to a lack of good nutrition. He is still on a feeding tube. At least at Hacienda he is now get the cc's of food through his tube to help him gain weight. He has lost so much weight and his bones protrude. A wound vac has been applied to his pressure sore to help keep it clean. The wound is open to the bone, nerves and muscle. If it doesn't heal he will need surgery, so we are trying to get in as much therapy as possible to stretch his contracted, shorten muscles by guiding movements to activate his brain and help him connect. This therapy will help him to remember how to move and develop new pathways as the brain is rewiring. Right now his only movement is his head and reflexes opening his mouth and biting down on anything that gets close to his mouth.
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| 2/24/12 Valentines Day |
He is standing on the tilt table at Hacienda underneath the Valentine balloon. Will you be my valentine AJ? When he was 14 he gave me candy and flowers for Valentines. It was such a special day. You can be valentine any day AJ, we are going to have many valentines a head of us.
WHEELCHAIR
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| 2/24/13 |
AJ has some new wheels. I can tell that he knows he is in a wheelchair and is not to happy about it. He cannot talk, but his eyes and face say everything. He knows he is in a different place with some very ill people. When he sat in the day-room for the first time at Hacienda, he looked around and about came up out of his chair, wanting to say something, but nothing would come out of his mouth. His head bobbing all around, I could see in his eyes and actions what he was saying the only way he could, "What is going on, where am I?"
INDEPENDENCE
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| 3/9/12 Visiting Grandpa |
Now that we have the wheelchair we can go outside and visit. AJ hasn't seen much sunshine. Grandpa is trying on AJ's new sunshades, AJ thinks this is funny.
PRESSURE SORE
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| 3/22/12 Pressure sore on the coccyx |
The pressure sore is from the initial fall. A patent leather belt applied pressure on his tail-bone. The skin has been continually breaking down, from a lack of good nutrition, and from sliding him on the bed and sheets. He has to be turned and repositioned every 2 hours to keep his blood and bowels circulating. The sore is not healing because of where it is located on his tail-bone. This puts him at high risk of a blood infection. The wound is so deep, I can see nerves, muscle, and bone. It is a catch 22, the sore is keeping him from continuing physical therapy, and the surgery will also keep him from physical therapy. He will have to lay flat in bed with only bed baths for at least 6 weeks. I am really concerned about this lack of movement. It is imperative that he activates his trunk, hip and leg area to connect with his brain to build new neuro pathways to help him initiate movement. I fear that he will develop a dependency on his caregivers.
COLOSTOMY
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| 3/23/12 X marks the spot |
I am not to happy about him getting a colostomy. This will lay him up and weaken his already weak abdomen. The doctor will be sewing up the pressure sore, a procedure called, a skin flap. The doctor wants to protect his work, so he insists on the colostomy, which is essential for healing. They replaced his feeding tube also. His hand is still contracted. The dots on his stomach are where they were going to pull out his intestines for placement of the stoma, I asked if they could go lower. We compromised where the "X" marks the spot. They said it can be reversed, but they also said that it would improve the quality of his life. I am not quite sure about that one. He is not paralyzed and it is to soon to tell what progress he will be making.
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| 3/23/13 Awaiting surgery |
He is looking so cute in his blue bonnet awaiting surgery to sew up the pressure sore, get a colostomy, and replace the feeding tube. The doctor said he is to lay flat in a special bed for at least 6 weeks, so as not to rupture the stitches.
THUNDERBIRD HOSPITAL
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| 3/24/12 after surgery |
Recuperating after the surgery as his sister lays by his side.
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| 3/25/12 signs of life |
As AJ awakens from the surgery, reflections of crosses are surrounding him through this image. The unseen and forever reassuring signs of hope! I see them everywhere and they remind me that he is in God's hands. Thank you Lord!
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| 4/6/12 stitches from the skin flap |
The surgery went well. His bowels are flowing through the stoma. AJ's reaction to the stoma as he looked down on it, was that he thought he was dying. I reassured him that this wasn't so. No telling what he was thinking to see his guts hanging out from his stomach.
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| 4/25/12 skin flap broke open |
AJ is to lay flat for up to 6 weeks. From a lack of good nutrition, he is having problems healing. The 6 weeks recovery process turned into 3 months.
PROM NIGHT AT LOS HACIENDA
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| 5/2012? Prom night |
His sister is getting him ready for the prom. He is swimming in his pants. He has lost so much weight and has no leg or arm movement, only his head, eyes and mouth.
4/19/12
Prom night, quite an event. they got tuxedos for all the residents. AJ didn't get a tux because he was in the hospital. I still got him dressed in his black pants and shirt. He smiled when he seen his clothes. I attended the prom dressed up. I need to put into words what I experienced:
The family's that I hadn't seen or met showed up for the event. I could tell they were familiar with the Prom. I can only imagine that they have been through this much longer than myself and have come to accept the inevitable affects on their loved ones. Sometimes I reflect and wonder why I am here with all these families. The Dr and his family showed up, a beautiful family and they are all so tiny. The doctor was in charge of the bubble machine and it was so cute to see his little boy with all the bubbles attached to his head because he had some kind of gel in his hair that attracted the bubbles. I wish I had my camera, but I don't think I can break out with the granddaddy camera. This is sensitive territory with all the kids with defects having fun. Some were oblivious as to what was happening, others moved what limbs they could to the music. The kitchen guy who has down syndrome broke out with some moves and was gyrating to Michael Jackson really coming out of himself. I think of myself and how it takes everything I have to come out of myself, and these kids have no fear or intimidation to perform. This is there home.
There was a beautiful cake made my the human resource lady and her mom. The cake was like 5 tiers, a full buffet, and a DJ. It reminded me of D-St. I hung out with AJ in his room. He didn't win the title of King. I couldn't help but wonder how AJ would take this event. He is becoming more aware of his surroundings, and I know the wheelchair bothers him. Katie, one of my favorite nurses showed up looking hot. I met Rose Bennet and her son, Ethan. I got a chance to talk to her about The Hyperbaric Chamber. She said her son, a victim of a near drowning, went into the chamber as soon as he could. Ethan was in and out of the hospital for over the next year and he couldn't go back into the chamber until after a year. she said it is best to do it ASAP and she gives the chamber credit for her son being able to track now and being somewhat responsive. She said it is expensive and told me of a non profit, I assume it is her non profit, that is just getting off the ground and can help. It is 40 visits in the chamber at 200 a piece, which can get really expensive. She said he could be transported right from Hacienda. She said the non profit was Breath for Life. I looked it up but couldn't find it. I will ask again this summer. Right now I have to concentrate on finishing up my school work and besides Aj is still laid up in bed as his wounds heal.
4/12/12
Laughing is going to help strengthen his vocal chords. So, it is my job to make him laugh. Today, while he was laughing his vocal chords came together and he made a sound!
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| 4/19/12 visit with Teresa, his other mom. |
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| 4/19/12 Happy to have visitors |
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| 5/14/12 Able to get up 3x's a day for an hour |
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| 5/10/12 Sleepy |
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| 5/25/12 Rock On! |
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| 5/25/12 Hanging out with his sister listening to Lil Wayne |
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| 5/25/12 Still in bed |
AJ has such a good attitude. It is this attitude that will get him through this. He is becoming dependent on his caregivers. This is becoming a learned condition from so many having to care for his dependent needs. We pass the time with visits, peeks in the mirror, listening to music, watching TV, flash cards, with new hand and mouth movements. He can move his lips, and I can read his lips. He said I am f.... crazy!
Still on tube feeding 105cc and 126lbs.
5/30/12
Karen, another one of my favorite nurses, a true angel got the Speech therapist to start him on a mechanical diet. AJ is eating! His first meal was a hamburger and zuchinni. He choked on the zuchinni, probably because he didn't like it! This is going to make all the differene in the world in the healing process of the pressure sore. Some healthy good nutrition for his skin, mind, and weight.
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